For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Shash10: I think its really according to the person taking it. Some go a year or more, some months, some just a couple of weeks and some have no SEs. I took Arimidex for 4 weeks. After the second week I started having joint pain and severe exhaustion. I felt like a 90 year old woman and I could barely walk up the steps into my home. I stopped it for about three weeks and my MO put me on Aromasin. I have been on Aromasin for almost a week. So far I've only had mild hot flashes. I hope this helps.
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Luvbugs: I think about it all the time. I hate taking this stuff, but I'm scared not to. If you read my post to Shasha, I had problems with Arimidex so my MO changed me to Aromasin so I hope it will be better for me. You may want to try that before completely stopping. If my SEs get to the point that I don't have QOL then I will definitely stop it.
We all know our own bodies more than anyone else and we have to do what we feel in our hearts is best for us.0 -
Sasha mine started 3 months after the first pill. The SE (stiffness) got much less about 1.5 years later. I do exercise. I've also been pretty lucky. Mostly stiffness in the morning for about a minute and I have 2 trigger fingers that get better in about 30 seconds after I wake up. Light hot flashes only when I eat Jalapenos.
5LuvBugs That is a difficult question. I think it also depends on your diagnosis. One friend from these boards has terrible SE but she is stage IIIB (lots of nodes) and highly positive. She is doing her best to tough it out. Need to check in with her to see if she's still doing it but my guess is yes. Have you tried all the other AIs? Seems many do better when trying one of the other 2.
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Luv bugs, so true! I've been on and off all three AI's. I take a lot of vacations. But no longer than a month. There is a side effect to stopping the meds. Anxiety! Risk vs benefit. My dr tells me that the return of the cancer is the biggest risk by far. So I exist more than live. Like you, I would love to get out there and DO. I'm going to drag myself back to bed now and take a nap! Just 3 l/2 years to go! If I didn't take it and the cancer came back...well, i couldn't live with myself!
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No se so far but trying to figure out the game plan. Was really hoping to going skiing this year, after last years hiatus. Just started taking glucosimin/chondrotin for possible joint pain. Also heard some women lose their hair.
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Shasha....I ski, cycle, hike, swim, and started running this spring. Missed a season of skiing, but due to a nasty ankle injury (fell of my bicycle in the rain), not treatment. I am stronger than ever, and looking forward to doing Cycle the Wave next Sunday, and ALL the hills.
I think I still need more energy stuff than prior to diagnosis (such as GU gel), but that is a small price to pay for being fit. I also need to make sure I get enough salt in my diet or I get nasty leg cramps.
I am roughly the weight I was when I finished chemo. I had lost about 15 pounds during....those needed as had gained with my post-divorce move to Seattle. I had gained a bit a year or so ago (see ankle injury above) but am slowly coming down now. so a question of staying strong and getting out there. Giving up eating isn't an option.
I got to start Arimidex and radiation the same week. I was fine.
One thing about hair. Mine didn't grow back all at once. This is the year it is getting thick again.
So plan on going skiing. But start now with training. Because skiing takes strength and energy, and you most likely need to rebuild. I am looking at the Hog Loppet for this coming winter (if a good day and I am trained). It's a 20-mile high country ski from Mission Ridge to Blewett Pass in the Cascades. Spectacular views. Haven't done since treatment, but am ready again. You start at 6200', descending to 4200. So you need some training at higher elevations too.
Off in a few to do a 35 mile ride on my NEW BICYCLE TIRES!!! Have a wonderful Sunday. - Claire
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There are a couple of threads here--probably more out there someplace--for those having made the decision/struggling with the decision/contemplating the decision to forego hormone therapy:
http://community.breastcancer.org/forum/78/topic/769937?page=7#idx_191
http://community.breastcancer.org/forum/96/topic/804284?page=2#idx_38
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No, I've never thought about stopping AIs. The thought of ca returning terrifies me.
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LuvBugs, I see you live in NJ...me too. I have a wonderful PT who works out of RWJ fitness center, teaches at St Peters and ....has developed an exercise program that the Cancer Institute of NJ is now getting ready to offer. I can not say enough great things about his program (dang guy is big on stretching among other things.)
The hospitals will soon be offering it as part of treatment after ending active stuff. I would be happy to give you old Tim the cancer guys contact info if you want. I think he said this morning that the hospital down in Freehold is getting ready to offer it also (forget the name)
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yeah, I did think once about stopping meds but so near to the end, I will tough it out
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Claire, cancer will never be able to catch you!
You give us hope.Keep it up! I think the most impressive part of your regime is how it effects your mental state.
You sound terrific!
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LuvBug
I hear your question and as much as I hate taking any medication -especially meds with these SE.. I'd be to scared to not take it... Its only been 2 months but some days I am so tired and achy -I hate it... I know I am gaining weight.. my thumbs and knees ache... trying to get out of the car I feel like such an old lady .. yep, I like gambling in AC but can't gamble with my health..
I know if it ever gets so unbearable I can't stand it, I will try another brand/type pill...
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Sasha, I had headaches the first few weeks after starting Arimedex, but they went away. I have problems with my left hip when I get up after sitting awhile. I always felt I had arthritis in it for a few years (which a bonescan eventually did show), but I think the Arimedex just makes it worse....not unbearable, I just walk like Chester on the old Gunsmoke TV show when I first get up. It goes away after about a minute or two of walking. I'm sure I have side effects, just none too bad. I do get hot flashes though! (OFF WITH THE WIG!!) I still get Herceptin and Perjeta every 3 weeks, so some of my problems (like diarrhea) are from the Herceptin. Hopefully, you will do as well as I am doing on it!!
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I think it took about six months for the really horrific side effects to kick in... I could feel them coming on, but I had great hope that they would continue to be mild enough to live with.
But eventually I was in so much pain I was using a walker just to get around my home. I was taking Norco AND Valium to take the edge off at night just to get some sleep.
And I wanted to sleep all the time, because getting up and getting dressed would take so much energy, and I couldn't always summon it up. It was like wearing one of those lead shields they put on you at the dentist's office.
I got an 8 week holiday from Anastrozole on my MO's recommendation. I really had no idea how many women just stop their AIs without ever talking to their docs. In fact, I talked to two of them at church this morning. One woman will not be going back on anything after trying both Arimidex and Tamoxifen. The other woman just decided she wanted to have the summer free to enjoy traveling and seeing her family.
I've been off the AI for three weeks. This weekend we cleaned out the pond and waterfall in our back yard. I was climbing on that waterfall like Spiderman, and hefting large rocks out of the pond and throwing them on the lawn. NEVER could I have done that a month ago!
Some SEs are taking longer to dissipate, but I've noticed I have so much more energy these days. Maybe it's from being in less pain.
Would I stop it completely? I always said I would, but now I'm totally on the fence about this.
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Blessings - I had no idea you were having such difficulties with Anastrazole
I know you sort of dropped off the boards for a while, but I figured it was either because you were doing well and taking a break from breast-related issues or that your implant pain had returned. Glad you're getting a break from the pain. I'm 2+ years into Arimidex. Many of my side effects have improved, but it still takes a daily toll on my life. I went through a stretch when I doubted I would make it 5 years, but I'm still hanging in there.
I've had several friends recently say to me something to the effect of, "Aren't you glad it's all over?" because I'm finally done with reconstruction. I know they mean well and are trying to be upbeat, but......
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Blessings2011 I had no idea it was that bad either for you. This article references a study that states up to 50% of women (especially those under 40) with early stage do not complete the full 5 year course of endocrine therapy due to SE. So the oncs know this is a problem: linky
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Iago--i can't get that link you put in your post to work, & i'd really like to read the article! Could you put a citation in a post so we can Google it? Doesn't surprise me that the discontinue rate for AIs is so high!
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I did not read the link but do remember reading an article at the beginning of this dang thing, that said as many as 20% of women do not finish the med, sort of think they were referring to Tamoxifin but you know how our memory is after 5 years of the junk......
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I feel as though we're a cult. This is the only place I feel understood.
Right now I'm having terrible palpitations which I am hoping is not a full fledged heart attack. How on earth can I tell the difference?
I wonder about the survival statistics. Are they calculated on the basis of total compliance? When i first told my son, who is a psychiatrist, that there was a failure rate, even on the meds, he said it was probably because of non-compliance. He can't get patients to comply and take their meds for 5 weeks, much less 5 years. At the time I thought he was just trying to buck me up. But now that I've been through this merry go round, I can't be sure. This go round I've been back on for 3 weeks and it feels as though it's killing me. if that's what is causing this. the uncertainty is murder itself.
I asked my onco and he said no, it was not about non-compliance. Cells can hide out. And when I think about it, afterall, not All estrogen is elimiated and not ALL of the tumor is estrogen dependent. But how on earth can they measure 5 year compliance? Right now I'm thinking I'll cut back to every other day. This is tough!!!
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Tina - I dropped off the boards for a while for several reasons... then just about the time my implant pain was resolved, the AI SEs hit with a vengeance.
When I tell my friends my doc took me off my breast cancer medication, they all light up and say "That's great!!!", thinking I must be cured now. Sometimes I don't even bother to explain.
Good for you for hanging in there! You're halfway there... you go, Girl!!!
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Tim, take it a day at a time. I wanted to quit many times in the past 5 years, and of course, I blamed every dang ache on the med
In reality the meds were only rarely at fault and mostly it was other meds or some bad move on my part
At one point I had palpitations, got sent to a cardiologist who did bundles of usual testing. No heart issues found and by the time I got through all the dang tests, I had calmed down....it was family issues at the time
now, try some yoga or whatever will help you calm yourself♥
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lago - thanks for posting that article! I had to laugh at the comments where women described it as "smug", "dismissive", and "judgmental"... obviously, the author never experienced the QOL-destroying SEs that many women here have had.
Yes, non-compliance is a big problem. I'm actually in a nation-wide clinical trial at Kaiser, where they are trying to see if a regular motivational reminder text from the doctor can help encourage AI patients to "remember" to refill and take their prescriptions.
I'm in the group that does not get text messages. Every three months, I see the Oncology RN leading the local study cohort, and I fill out a lengthy questionnaire regarding symptom severity. Then I have to pee in a cup so they can determine the amount of Anastrozole in my system... they don't just take my word for it!
(This is the protocol for every woman in the study... they will then take a look at long term survival rates between the two groups when the study is over in four years.)Like I said, I was surprised to find out that most women who stop the AI never even discuss it with their MOs. I always wonder why, if you can't have an honest discussion with your doctor, why is that person your doc?
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I think the question "Should I take (or stop) an AI?" is in the same category as "Should I have a bilateral mastectomy?" It is such a personal decision with many factors.
What I know is true: my cancer was TINY (one IDC tumor at 1.5 millimeters, and one IDC tumor at HALF a millimeter) and was caught early. Had a bilateral mastectomy with immediate recon. All margins were clear, no rads needed. No lymph node involvement, no Oncotype test, no chemo.
By the time I had my surgery, I had read a gazillion posts here on BCO, as well as doing online research on AI side effects. I had made up my mind to NOT take them. But when I met with the MO after my final path report came in (which showed NO evidence of the IDC dx'd in my biopsies), she told me that my risk of recurrence was 1%.
I told her assuredly I would not want to take the AI, because I didn't need it. Menopause and a hysterectomy meant I had no estrogen in my body. She politely educated me otherwise. I went on a strict weight loss program and got my BMI down to normal. That was a big factor.
But somewhere in the course of our conversations, I had a change of heart. The MO told me that taking an AI wasn't about long-term survival rates, but rather risk of recurrence. I said that to me, 1% was very low.
"Yes", she said, "but it's not ZERO." She said that even though my risk was low, statistics showed that I could still go on to become Stage IV, which I already knew from reading in the Stave IV posts on BCO.
What we negotiated was that I would try the Anastrozole, but if I had serious side effects that affected my QOL, I would want to stop. She agreed, saying that we could try a drug holiday, or a different drug, or even stop completely if warranted.
When I did finally go in and request the drug holiday, we had another long talk. She said there probably weren't many other drugs she could put me on, as they all had the potential for the same SEs. I said I'd read posts where women who didn't do well on one drug did better on another. She said to wait and see.
She also said that with my already low risk of recurrence, she would be comfortable letting me stop the AI completely.
Of course, later, when I said my risk was only 1%, she replied "But it's not ZERO!" so I think there are more discussions in my future.
I'm so on the fence about this. I want to do everything I can to prevent a recurrence, but I think my age and lifestyle influence my motivation to continue a drug that is harming me in great and possibly permanent ways, for a payoff that I may not need, or - truthfully - work.
I am SO proud of all the women who struggle through the SEs because they are determined to do whatever it takes to not go through BC again.
I also respect those who have decided to discontinue treatment, because after much soul-searching, they have decided that this is the best way to live out the rest of their lives.
(My mom had BC at age 60 - she had a radical mastectomy, no recon, no rads, no chemo, no treatment at all. She passed a few years ago at the age of 88, without any recurrence of cancer at all.)
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Blessings, how on earth were your tiny tumors found? My radiologist indicated that most tumors are found at about one centimer. Mine was 1.1 cm at dx, but, when they looked back at my old mammos, found it had been hiding in plain sight the year before, and the year before that.
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Blessings, I sure understand why you are conflicted!!! One thing that your oncologist is somewhat wrong about; even though the other Als have the same potential SEs, MANY women do lots better on one than another. If you want to continue, then I would insist on trying another one.
Just a note, even though some people have significant SEs, many do not. If you are just starting out, go in with an open mind and be glad that we have this opinion, as it reduces recurrence risk more than any other of our treatments. And yes, the statistics are based on you completing all the recommended treatments.
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Thank you Claire. I only just started walking again (only 2 miles ) but I agree I have to train and strengthen before skiing. I'm trying to build my energy level then plan to work with a personal trainer to give me a program I can follow. I don't do arobics.
I had to stop Herceptin early due to the low EF w my heart so I really have to continue the Arimedex. I have another echo in 2 weeks to see if I can resume Herceptin, but don't want to get my hopes up this time. But I agree if you can its important to try to be fit. Thx for the inspiration.0 -
Tina - I've had several friends recently say to me something to the effect of, "Aren't you glad it's all over?" I know they mean well and are trying to be upbeat, but...... I think we can all relate to that. I have a friend at church that is TN. She started chemo after me and will finish before I am done with Herceptin. We have several freinds in common and they just don't understand how she can be all finished and I am still going for infusions and am supposed to do 5 years of AI. To them all BC is the same.
Timbuktu, I feel as though we're a cult. This is the only place I feel understood. That about sums it up!
Blessings, I think the question "Should I take (or stop) an AI?" is in the same category as "Should I have a bilateral mastectomy?" It is such a personal decision with many factors. Such a great way to look at it!
As for me, my drug holiday is over and I will start taking Arimidex again on Wednesday. Brand name this time and 1/2 a pill at a time for a few weeks to see if I can even tolerate that. It will be the 1 year anniversary of the surgery that found my reccurrance/new primary, so it will be easy to remember when I started!
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My TN friend was jealous because I had more options than her. She wishes like crazy that there was something more she could be doing after the initial treatments, so it really is a matter of perspective.
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Blessings----My aunt had a radical mastectomy in 1987 at the age of 42, no rads, no chemo., no anti-estrogen meds., she is now 68 and never had a recurrence of cancer either....So who knows?
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